• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Stone Soup Group

Supporting Alaskan Families who care for children with special needs.

  • About
    • History & Mission
    • Our Team
    • Our Accountability
    • Our Partners
    • News & Updates
  • Contact
  • Careers
  • Press
  • Facebook
  • Twitter
  • YouTube
  • Newsletter Signup
  • Search
Donate
  • Start Here
    • Choose the Right Path for Your Family
    • For Parents & Families
    • For Professionals
    • Programs & Services
    • Contact Us
  • Connect
    • Parent Navigation
    • Developmental Disabilities Resource Connection (DDRC)
    • MAP Parent Mentor Program
    • Specialty Clinics
    • Family Stories
  • Training & Events
    • Training and Event Registration
    • Community Calendar
    • 2023 Stone Soup Group Parent Conference
    • Parent Conference Archive
    • Training and Event Recordings Archive
  • Get Involved
    • Join the Board
    • Become a Mentor Parent
    • Speak Out
    • Invest in Families
    • Volunteer
  • Resources
    • Resources for Families in Response to COVID-19
    • Find a Provider
    • Family Resource Guide
    • Resources, Forms, Tip Sheets and Templates
    • Publications
    • Translated Videos and Materials
    • Financial Supports
    • FAQ
  • About
    • History & Mission
    • Our Team
    • Our Accountability
    • Our Partners
    • Careers
    • News & Updates
  • Contact
  • Careers
  • Press

What Healthcare Looks Like For My Family…

February 1, 2017 By Tory Shanklin Leave a Comment

img_4954Having a child with a rare genetic disease or a lifelong disability opens your eyes up to a whole new understanding of how medical care, prescriptions, and insurance work. Before my kids, I thought I understood… You had insurance, you had a co-pay and a deductible, and you got the treatment and medication you needed when you needed it. That was true until it didn’t work that way anymore and my husband and I were left with thousands of dollars in medical bills, and no way to afford the medication 2 of my 3 kids needed to live a normalized life.

Author Rachel Vandiver and her husband. Rachel is the mother of 3 children, Aidan, Riley and Sadie. Two of their children have been diagnosed with a rare genetic form of dwarfism, Russell Silver Syndrome. This is their story…

Since my insurance provider was unable to help cover the therapy my son needed, at several points, I did try and seek help from the local school district for the developmental disabilities he was experiencing (he is the oldest of the 2 with disabilities, and the only one school age). What I found in that system was nothing but more stress and struggle. You see, they don’t view disabilities like we do. They only help children with significant delays or with diagnoses they are familiar with. They have little checklists and charts to show them who they can help. They have limited funding to meet the needs of a student like my son because they truly just don’t understand his rare disease. And that doesn’t even address the other main problem. Prescriptions.

One of the medications my children require can be in excess of $30,000 per year if insurance won’t pay. Multiply that by 2 and you can see that there is really not a way for a family to do that.

While attending an out-of-state medical convention three years ago for children with the disorder my 2 faced, I was told about a disability Medicaid based not on income but on the child’s medical diagnoses and level of care needed. When I returned home I begin asking about this and finally found out about TEFRA Medicaid. Applying was another huge process as you have to work very closely with a care coordinator. It is a multi-part process, in which you must provide proof and documentation that your child’s disabilities are considered serious enough to warrant a high level of care. The decision is in no way based on the family income or assets. They do look at the child’s assets – if any.

img_4953

To further explain what TEFRA is I have copied basic info directly from the State of Alaska Department of Health and Human Services website. “The Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) is a Medicaid program designed to help children under 19 years old with costs related to their disabilities. This covers significant medical, developmental or psychiatric needs. Although they may be deemed “disabled” or have high medical costs, not all children qualify for this program.” The website continues on to touch on criteria for TEFRA Alaska Medicaid;

“To qualify, your child must meet one of the following three “level of care” criteria:

  • Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID)
  • Nursing Facility (skilled and/or intermediate) (NF)
  • Inpatient Psychiatric Hospital (IPH)

Each of these categories has specific criteria, so not all children who receive one of these three levels of care will qualify for Alaska Medicaid – TEFRA.”

This level of care needed must also be annually proven to continue the TEFRA coverage for each child. The annual renewal process can be time-consuming and a little stressful. But now, thanks to TEFRA both of my children have the medication and the therapies they need covered (for now and at least the next year).

We have also elected to homeschool my son with disabilities due to the inability of the school district to meet all of his needs.

Despite having double coverage through private insurance and now the additional TEFRA Denali Kid Care program, we still run into problems receiving and keeping quality healthcare for my children.

My son has recently been removed from a therapy he needs and deserved because of insurance problems with our primary insurance provider. They request ridiculous/repetitive documentation from providers and string out payments on sessions for sometimes up to a year. Unfortunately, as our secondary insurance provider, TEFRA, cannot step in and pay these claims until after our primary private insurance company formally declines them. In this particular case, we have a $3,500 balance despite having double coverage of insurance.



img_4632Family voices matter! Thank you, Rachel, for sharing your story. We value and appreciate all you do in the special needs community.  

Filed Under: Stories Tagged With: advocacy, Alaska, Alaskan Stories, BeAVoice, children with special needs, disability, family, family voices, healthcare, heath care, insurance, parenting, waiver

Reader Interactions

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Footer

Parents & FamiliesParents & Families

Find assistance with school, health care or behavior related issues through Parent Navigation, or be connected with other families in similar situations.

Learn More

Training & EventsTraining & Events

If you are a parent, professional or youth with special needs, Stone Soup Group offers year-round activities and training to help you gain skills and connect with others in our community.

Learn More

CommunityCommunity

Let your voice be heard. Join various community opportunities and speak your mind about the issues facing children and youth with special needs and the families who care for them.

Learn More

Find a Provider

Find a Provider

Google will tell you who is in our community, but it can’t tell you whether other families would recommend them. We can help you find recommendations from other families, along with other details like what insurance plans are accepted.

Learn More

Stone Soup Group 307 E Northern Lights Blvd #100 Anchorage, AK 99503 · Directions and Map
Phone: (907) 561-3701 · Tax ID: 92-0149995
Board Login
Privacy Policy and Website Disclaimer



Top
Copyright © 2023 Stone Soup Group · All rights reserved. Website by Sundog Media, LLC Logo Sundog Media, LLC.